Question My Name is Crystal, Ask Me Anything!

[PGen98]

That does sound tough. My mother always knew who I was but she forgot relatives she didn't see as often like my daughter and the repetition is very common. My mum used to make up stories that she believed were real although they were too outrageous to be true.

I used to work in an old people's home where a lady every day used to say she had to go and make her husband's tea and see to her children. Her husband had been dead for years and her children were grown but in her own way she was happy in her little world. Their long term memory lives on within them.

Hope you get to see your family soon.?

I envy anyone that has the sheer patience to work with people with dementia. I've just got my mother and it's a full time job, so I can't imagine working with multiple cases at a time. Must be exhausting after a day of that! My mother does the stories, too, she'll make up that she was just with someone she hasn't seen in years, or that she knows a random stranger she sees on the side of the road as we're driving and hasn't seen them in ages. There's a shot that opened up early last year just around the corner from us, and she's convinced she knows the owner of it and he promised to give her the shop, despite the fact we've never set foot in it! It's funny, tragic and a bit irritating all in one go. That's probably the most difficult part of it for me, a lot of the repetition, the terrible attitude and the calling me every name in the book she can think of when she gets in said mood is very frustrating to deal with, but you have to keep it in your mind it's not her fault and it's not her saying it, it's the disease.

I just wish I could get her to sit still when she gets in the mood to leave, because it's reached the point where the second she comes home from a trip, she'll be worn out and ready to sit down, but then just after sitting down she's getting up to leave again, and no amount of chatting or changing the subject or trying to get her involved in other things helps to change her mindset now. She's just ready to walk out all the time, we've had to change the locks on our doors so that you need keys to open them on the inside, because she will walk out and I've had to chase her down a couple of times. It's tough, it's a very tough job looking after her, so I applaud anyone who does so with more than one person, because I have no idea how they cope.

 

[sprite1950]

To be honest I worked as a cook there so didn't have to care for the old people. It was a residential home for the elderly so they didn't all have dementia but I got to know them all personally, their funny little ways used to amuse me and I was always gutted when they died.

My mother was mean to me too. She used to check her bank statement and say that I had bought my contact lenses from her money when it was her hearing aid batteries. She used to bad mouth me to my sister too. They always attack the people who are closest to them. My nephew hardly ever went to see her but when he did you would have thought the Queen had come to visit as she would praise him for hours regardless of the fact he could go for a year and not bother. It's hard to take.

I am guessing as you are only 33 your mother has early onset of dementia. My mother was old and it started in her 80s but she died at the age of 90. I had mixed feelings about it, and of course I was sad, but she was anxious all the time without knowing why and although I feel guilty for saying it, the relief of not having to worry about her all the time was wonderful.

 

[PGen98]

To be honest I worked as a cook there so didn't have to care for the old people. It was a residential home for the elderly so they didn't all have dementia but I got to know them all personally, their funny little ways used to amuse me and I was always gutted when they died.

Ah, yeah, that's probably the best position to be in, I'd imagine. The chance to interact and get to know them, and yet still distanced from the mayhem. It's great getting to know people, particularly the older generations who feel like no one wants to know them, I've always found older people to be some of the most incredible people to talk to, about quite literally anything. It is devastating when they die, though, because you do indeed get to know them and appreciate their company.

My mother was mean to me too. She used to check her bank statement and say that I had bought my contact lenses from her money when it was her hearing aid batteries. She used to bad mouth me to my sister too. They always attack the people who are closest to them. My nephew hardly ever went to see her but when he did you would have thought the Queen had come to visit as she would praise him for hours regardless of the fact he could go for a year and not bother. It's hard to take.

It's very hard to take when they treat you like dirt and everyone else like they're absolute saints. I've gotten used to it, however sad that might sound, but you learn to treat it as what it is, the disease rearing its' ugly head once again. Now I just wait patiently for the fleeting moments during which she is herself. They last for a couple of minutes, she knows who I am and she apologizes for being so grumpy lately, and she even thanked me once for helping her, and then just like that it's over and she's gone again, usually for months on end...back into the spiral. It's a horrible, horrible way to lose someone, I wouldn't wish it anyone.

I am guessing as you are only 33 your mother has early onset of dementia. My mother was old and it started in her 80s but she died at the age of 90. I had mixed feelings about it, and of course I was sad, but she was anxious all the time without knowing why and although I feel guilty for saying it, the relief of not having to worry about her all the time was wonderful.

My mother's 74 now, so it's not exactly early onset, I was a later in life birth, she was in her 40s when she had my sister, and then me. She had our half sister and brother in her 20s, they're 16 and 17 years older than us, respectively. She's had it for about 5 years now, though it was not at all bad at first, just a poor memory, and it progressed so fast over the past 3 years or so. I understand the relief you likely felt, very much so. As self-serving and selfish as it may seem to others, the toll it takes on you, looking after someone with dementia, is quite staggering.

 

[sprite1950]

Ah, yeah, that's probably the best position to be in, I'd imagine. The chance to interact and get to know them, and yet still distanced from the mayhem. It's great getting to know people, particularly the older generations who feel like no one wants to know them, I've always found older people to be some of the most incredible people to talk to, about quite literally anything. It is devastating when they die, though, because you do indeed get to know them and appreciate their company.



It's very hard to take when they treat you like dirt and everyone else like they're absolute saints. I've gotten used to it, however sad that might sound, but you learn to treat it as what it is, the disease rearing its' ugly head once again. Now I just wait patiently for the fleeting moments during which she is herself. They last for a couple of minutes, she knows who I am and she apologizes for being so grumpy lately, and she even thanked me once for helping her, and then just like that it's over and she's gone again, usually for months on end...back into the spiral. It's a horrible, horrible way to lose someone, I wouldn't wish it anyone.



My mother's 74 now, so it's not exactly early onset, I was a later in life birth, she was in her 40s when she had my sister, and then me. She had our half sister and brother in her 20s, they're 16 and 17 years older than us, respectively. She's had it for about 5 years now, though it was not at all bad at first, just a poor memory, and it progressed so fast over the past 3 years or so. I understand the relief you likely felt, very much so. As self-serving and selfish as it may seem to others, the toll it takes on you, looking after someone with dementia, is quite staggering.

To me it is young to get dementia as I am 70 and have very good mental and physical health. I do worry about it as it runs all down my mother's line. Her father and both her brothers had it too but so far so good. I get memory lapses like everyone of my age but nothing too serious.

I do feel for you because even though you know it's the disease making her behave the way she does it can still make you angry to feel unappreciated for all the things you do. You could really do with some support but of course this lockdown is making it impossible to travel anywhere right now. As soon as it's lifted you could think about taking that trip to the UK although I'm wondering how your mum would react to being taken from her home and flown across the pond to be with people she probably can't remember.

I have had legal custody of my granddaughter for the last 10 years. She is 14 now and a bit of a nightmare. My mum stayed in her own home until the last 18 months of her life and then went into a residential home as she wasn't safe to be living alone. She would never have coped with an unruly child so I couldn't have her in my home. They were very good to her there. It was the same home I worked in so I knew everybody which made it easier. Would you consider that if you came back here or do you prefer to look after her yourself? You must be a very caring person as my kids are 34 and 39 and I'm pretty sure they wouldn't look after me!

 

[PGen98]

To me it is young to get dementia as I am 70 and have very good mental and physical health. I do worry about it as it runs all down my mother's line. Her father and both her brothers had it too but so far so good. I get memory lapses like everyone of my age but nothing too serious.

I think it's also likely very helpful that you're fully engaged in communities like this, a place to go and keep meeting new people, talking about new and different things, and generally keeping yourself sharp mentally. A lot of my parents' friends hit retirement and just sort of forgot to live life, went about things as if they had nothing at all to do and nowhere to be and it had a dramatic impact on their physical and mental well-being in a very short time span. My mother tried to keep herself active and doing things as much as possible prior to this, and I even tried to show her how to get involved in online communities, as well, hoping she would chat with and meet new people to give her something to focus on, but she never took to it. I genuinely believe if she had taken to it, or found herself a group of people or community to interact with on a routine basis she would have staved off some of the decline she's seen, but once she started to slow down a little bit (something not very easy for her to do, she was a very active and busy person, desperate to go and do things her whole life) it seemed as though everything came toppling down at once. I have no doubt in my mind that keeping engaged and keeping your mind as active as possible is the key to ensuring you stay mentally healthy, and that has to ring true as you age, as well.

I do feel for you because even though you know it's the disease making her behave the way she does it can still make you angry to feel unappreciated for all the things you do. You could really do with some support but of course this lockdown is making it impossible to travel anywhere right now. As soon as it's lifted you could think about taking that trip to the UK although I'm wondering how your mum would react to being taken from her home and flown across the pond to be with people she probably can't remember.

I have to agree it probably wouldn't be ideal to take her to the UK, so in all likelihood it will not happen. I know my older sister who still lives in the UK is trying to come out for another visit, but she hasn't actually been out since before her decline and I don't think she would be able to handle seeing her in this state, so I'm worried about that, as well. It's a bit of a no-win scenario, so I'm just plodding on and doing what I can. It would be nice to have family around, but the practicalities in today's world just make it impossible, sadly. Perhaps one day, though!

I have had legal custody of my granddaughter for the last 10 years. She is 14 now and a bit of a nightmare. My mum stayed in her own home until the last 18 months of her life and then went into a residential home as she wasn't safe to be living alone. She would never have coped with an unruly child so I couldn't have her in my home. They were very good to her there. It was the same home I worked in so I knew everybody which made it easier. Would you consider that if you came back here or do you prefer to look after her yourself?

It's something I have been told to consider many times, and logically it does make sense; however, the one thing that stops me from going through with that is the fact that my mother was born and then immediately placed into a Barnardos children's home where she stayed until she was old enough to move out on her own. I can't find it in myself to put her into a facility because in my mind it's exceptionally cruel that she started her life in a home like that and then here we are late in life and she's looking at possibly ending up in something not entirely dissimilar. I don't know if that logic makes sense outside of my brain, but it just terrifies me to think of her in there scared and not knowing where she is, why she's there and who she's with. I know they're well trained, I know they are courteous and I know they have the best interests of their residents at heart, but that fear is just stuck in me. That she wakes up each day thinking she's back there and scared...maybe that's overly paranoid, but that's where my brain goes when it comes to facilities like that.

You must be a very caring person as my kids are 34 and 39 and I'm pretty sure they wouldn't look after me!

I like to think it's how anyone would react. I actually lost my job just before her big decline, and so I decided that instead of looking for a new job, I'd just take on looking after her full time, I did that for the last 4-ish years, and just this past October I got approved to work for a care agency who assigned me as her full-time caregiver so that I could draw a (small) wage, so at least that part has helped a bit, since I depleted my savings not long after starting this little journey, but ultimately I just view it as something that I think anyone would do for their parents, or at least it seemed like a natural decision for me. I have my down moments, moments of utter despair and doubts about what I'm doing with my life in terms of what the future will hold, but I don't regret looking after her. Even when she's at her utmost worst, she's my mother and she deserves at least this much from me.

 

[sprite1950]

You know I sometimes feel a bit hard done by having to look after my granddaughter as she is really difficult. I feel that this should be my time to enjoy as we never know what is around the corner and I don't know how many good years I have left, but hearing your story has made me realise that there are people far worse off than me. I have a Special Guardianship Order (SGO)and get paid quite well to look after her. She is my son's child and both he and the mother were heroin addicts which is why I have her.

We don't know why life throws these obstacles in our way and I often look at other people and wish I had such a simple life but it is what it is. I have some good friends but only a very small family as my parents are both gone. I wish you the very best in life, you are still young and have plenty of years ahead of you, you just need some support to help you through these difficult years.

 

[PGen98]

You know I sometimes feel a bit hard done by having to look after my granddaughter as she is really difficult. I feel that this should be my time to enjoy as we never know what is around the corner and I don't know how many good years I have left, but hearing your story has made me realise that there are people far worse off than me. I have a Special Guardianship Order (SGO)and get paid quite well to look after her. She is my son's child and both he and the mother were heroin addicts which is why I have her.

Well you're quite right to feel that way, it should indeed be your time to enjoy, having raised your own children already, but sadly we're all given things to go through and we just have to make the best of it. I'm sorry to hear about your son, it's not easy having an addict in the family, and it's especially cruel on the child of an addict, so I'm glad your granddaughter has you to support her and look after her, because the alternatives are certainly not pleasant. When she grows up a bit and matures I'm sure she'll realize what you've done for her, what sort of a life she could have had if you had not taken her in, and be appreciative for all you gave to her. Those teen years are certainly difficult years, though!

We don't know why life throws these obstacles in our way and I often look at other people and wish I had such a simple life but it is what it is. I have some good friends but only a very small family as my parents are both gone. I wish you the very best in life, you are still young and have plenty of years ahead of you, you just need some support to help you through these difficult years.

Thank you, I truly appreciate that and I wish the same for you! It's not easy when you're given a difficult situation to deal with, but you make do and mend as best as possible and hopefully everything works out for the best .

 

[preacherbob]

Phoenix eh?
I used to be the Chef at Durants Restaurant in Phoenix.

Have you ventured out and visited Carefree? There used to be a small restaurant called the Our Place restaurant where I served the likes of Amanda Blake (Gunsmoke TV series) and Dick Van Dyke many a toddy.

 

[PGen98]

Ah, I'm familiar with Durants, though I have never actually been. It's got an impressive reputation, and those I know that have been there rave about it. It's also been around for a good 60 or 70 years at this point, an impressive stretch of time for a Phoenix restaurant!

I have been to Carefree, most definitely! It's a nice little area with some gorgeous scenery! Reminds me a little bit of Sedona, minus the red in the rocks. Fantastic area!

 

[Spikey]

How big is your TV? How many TV's do you have?